Online Support Group for Women
Join BCAN each month to talk about issues and concerns that are unique to women facing bladder cancer and meet others who know what you are going through. Moderated by nurse and BCAN patient advocate Karen Sachse, RN, MSN and Social Worker Miriam Pomerantz Kadosh, MSW, LCSW.
The support group meets on the first Tuesday of each month at 7- 8:30 pm pm ET. You must register for each session you plan to attend. We look forward to seeing you.
Background
Bladder cancer has long been considered a disease of older men. In 2023, the American Cancer Society estimates more than 82,000 will be diagnosed with bladder cancer in the United States. Of those, more than19,000 will be women. Though it is more prevalent in men, studies have shown that women are more likely to present more advanced tumors at diagnosis. According to a report published by the National Cancer Institute, the outcomes and survival rates for women withbladder cancerlags behind that of men at all stages of the disease. African-American women have poorer outcomes when diagnosed withbladder cancer. They present with the highest proportion of advanced and aggressive tumors when compared to African-American men and Caucasian men and women. You can learn more about about the statistics, treatment and survival differences in our webinar:Women and Bladder Cancer.
It is important for women to understand their risks forbladder cancerand know what to ask their doctors.Awareness is the key: in most cases,bladder canceris treatable, but prompt diagnosis is critical.
Men are at a higher risk of developing bladder cancer. However, women present with more advanced disease and have more unfavorable outcomes. Research has shown that there is often a delay for women getting into treatment for bladder cancer. Men actually receive a cystoscopy (to look inside the bladder) a lot quicker, and then start treatment sooner in their diagnosis than women. To learn more, BCAN’s 2021 Bladder Cancer Think Tank featured presentations about biologic sex differences in bladder cancer.
Why is there a disparity between men and women with bladder cancer?
In many cases, there are significant delays in diagnosingbladder cancerin women. Many women ignore the most basicsymptom—blood in theurine. They may associate it with menstruation or menopause and delay reporting thissymptomto their doctors. Even after reporting the problem to their doctors, blood in theurinemay be initially misdiagnosed. It may be seen as asymptomof post-menopausal bleeding, simple cystitis or a urinary tract infection. As a result, abladder cancerdiagnosis can be overlooked for a year or more.
What do women need to know about bladder cancer?
•Bladder cancercan affect women at any age.
• Smoking is the greatestcontrollable risk factor. Smokers getbladder cancertwice as often as non-smokers. However, up to 50% of bladder cancer patients may have no history of smoking. Learn more about the risks associated with bladder cancer.
•Bladder cancersymptoms may be identical to those of a bladder infection and the two problems may occur together. If symptoms do not disappear after treatment with antibiotics, insist upon further evaluation to determine whetherbladder canceris present.
•Bladder cancerhas the highest recurrence rate of any form of cancer—between 50-80 percent.
Watch our informative webinar: Women and Bladder Cancer the Unspoken Demographic
What can you do?
The most important thing for you is to know thesigns and symptomsofbladder cancer. Be sure to report them to your physician immediately. The most common sign—blood in theurine—can be visible (though it may sometimes appear dark brown or orange) but could also only be detected under a microscopic examination. It is important to visit your doctor for routine examinations. Most bleeding associated withbladder canceris painless. Close to 30 percent ofbladder cancerpatients experience burning, frequent urination or a sensation of incomplete emptying when they urinate.
If you experience any of these symptoms, see your doctor as soon as possible. Many women may first go to a primary care physician or gynecologist if they have blood in their urine. Primary care and gynecology follow their own guidelines for assessing blood in urine. This can sometimes delay their diagnosis until the cancer is more advanced. A urologist is generally the medical professional that diagnoses bladder cancer. View the American Urological Association Guidelines for Microhematuria. Blood in urine is not normal and should be checked out.
Women and Bladder Cancer: Sharing Stories to Advance Research
BCAN was invited to share the experiences of women diagnosed with bladder cancer at the “Bladder Cancer in Women: Identifying Research Needs to Improve Diagnosis and Treatment”program sponsored byJohns Hopkins Greenberg Bladder Cancer Instituteand theAmerican Urological Association Translational Research Collaboration.Each of these women’s stories are memorable and unique.Sadly, their stories are repeated around the country because women are not the “typical bladder cancer patient.”Read the the transcript of their presentation.
Advice from women survivors
The good news is that in most cases, if caught early,bladder canceris a manageable disease. There are tens of thousands of women surviving and thriving, even withbladder cancertoday. Read some of their stories below.
Colleen’s Story: “It is important to take each day as it comes because the obstacles seem insurmountable in the beginning.”
Colleen Griffin’s journey began with a puzzling diagnosis of interstitial cystitis. Despite treatments, her symptoms persisted. Hope flickered with a mysterious back implant but a month later, strange pains led to a revealing CT scan – bladder cancer. Through chemotherapy and a radical cystectomy, she persevered with unwavering support. Today, she stands as proof of […]
Anita’s Story: “We have to be our own advocates and live life as bravely and as fully as we can.”
It started with a seemingly innocent symptom: blood in her urine. Initially dismissed as a urinary tract infection by her general practitioner, Anita sought a second opinion in December 2019. By January 2020, the reappearance of blood in her urine prompted an urgent referral to a urologist which led to a turning point in her […]
Colleen’s Story: “I told myself, Okay, I’m going to live in the moment the best that I can and I’m not going to let this stop me.”
Battling through her bladder cancer diagnosis as a young mother, Colleen found hope and resilience, ultimately embracing a transformative therapy. Amidst her journey, family, friends, and the support of BCAN’s invaluable resources became pillars of strength. This is Colleen’s story: I was diagnosed with bladder cancer in May of 2022 at 36 years old. I […]
